Diem Brown's death sheds light on young adult cancer

By Parvati Shallow

Updated on: November 19, 2014 / 11:58 AM
/ CBS News

The recent death of Diem Brown -- the spunky, tough-as-nails reality star and cancer advocate -- rocked the many who'd followed her long, public struggle with the disease. Brown, who was 32 and had beaten cancer twice, lost her battle when it returned a third time in the form of colon cancer and spread to her liver and lymph nodes.

Nearly 70,000 Americans aged 15 to 40 are diagnosed with cancer each year, according to the National Cancer Institute. These are critical formative years, when people are making important life choices: beginning careers, getting married and starting a family. And, because certain types of cancer and cancer treatments can cause infertility, getting sick sometimes means having to start immediately planning for an unimagined future.

Dr. Elizabeth Fino, who sees patients at the NYU Fertility Center, says young adults have to make hard choices very quickly. "Most of the cancers encountered in that age group are aggressive and need to be treated very quickly. So, in midst of having to make a lot of decisions regarding cancer, they also have to come to us and be proactive about preserving their fertility."

Fino says it can be overwhelming for young women to have to plan chemo and fertility treatments simultaneously. "With some types of aggressive breast cancers, young women also have to think about lining up a gestational carrier down the road," she says.

The overwhelming emotional, physical, social and spiritual impact of receiving a cancer diagnosis at this pivotal time in life can cause some people to want to give up. Others, like Diem Brown, choose to move through the traumatic journey by reaching out for support and getting active about finding solutions.

Some of these young people have become strong forces of cancer advocacy, using social media as a tool for raising awareness and education. Speaking out about their disease and treatment on social media, and building supportive communities is a way to make meaning out of a devastating diagnosis.

"Through blogging, writing, and social media, I've found my voice, and I've found small ways to make a difference. That's something you can do from a hospital room. It's empowering and liberating to realize that you're not just a cancer patient but you're so much more than that," leukemia survivor and New York Times "Well" blogger Suleika Jaouad says.

Brown shared her cancer journey in real time with 200,000 Twitter followers, nearly 200,000 Instagram followers, and through her blog for People.com. One of her final tweets shows her will to live and her willingness to reach out for support.

I NEED PRAyErs and advice my doctors are seemingly giving up but I won't & can't rollover. Whatever option I have to LIVE I'm grabbing!

When Brown died just three days later, the young adult cancer survivor community took a hard hit.

"Diem's death hits close to home, not just because she was a pioneer and inspiration in the way that she dealt with her cancer, but for a lot of people who were sick, it triggers this fear that one day you might be facing your own mortality," says Jaouad.

In order to make it through the painful treatments, isolation, anxiety, and fear of relapse, many young adults choose to devote their precious time to 'something bigger than themselves.'

Brown founded the non-profit MedGift, a website that allows people to donate money to support others who are going through health-related hardships. Even from her hospital bed, she worked tirelessly to help spread the word that each and every person can make a difference in this fight.

"Hope is one of the strongest emotions and hope can overcome fear and despair ... if hope is given enough fuel," Brown wrote in her blog for People.com.

Another young adult cancer survivor, Matthew Zachary, founded the non-profit organization Stupid Cancer to comprehensively address the needs of young adults with cancer. It offers advocacy, research, support and outreach, and raises awareness through conferences and social media.

The group also organizes meet-ups nationwide to help young adults with cancer connect "with someone just like you who 'gets it' and won't judge or stigmatize you."

With a mission to build community, improve quality of life and help with the search for meaning, the organization addresses the isolation and loneliness that many young adults feel when struggling with cancer.

Survivors Stand Up to Cancer

But in order to keep the fire of hope burning, young adults fighting cancer need support financially as well as emotionally.

Two-time cancer survivor and winner of the TV show "Survivor," Ethan Zohn worked closely with Brown on the entertainment industry's Stand Up to Cancer campaigns. Since May of 2008, SU2C has raised $261 million to fund cancer research and support clinical trials to find new drugs and develop new treatments.

Zohn says this is a critical piece of the puzzle. "Cancer patients are desperate. We are literally waiting every minute of every day for some life saving breakthrough."

Zohn was diagnosed in 2009 at the age of 35 with Hodgkins lymphoma and initially decided to open up about his private struggles with cancer because he realized sharing his story had the power to help others.

"TV, print, radio, social media became my best friend and a cathartic distraction to the reality of my situation. I tweeted, Facebooked, blogged, vlogged, chat-roomed," Zohn says.

Twenty months after publicly defeating cancer, Zohn suffered a relapse. After that, he says his approach to life shifted toward creating balance and supporting everything that's fueling this movement to end cancer.

"For me that means, committing myself to this cause, doing everything in my power to make sure someone else doesn't have to go through the same crap I went through," Zohn, who is now in remission, says.

Jaouad, Zohn's friend and supporter, agrees, "We are advocates and educators. It's the only way to make meaning of my suffering. So that many people won't have to suffer."

"We've come so far with cancer research, but there's still so much do to," she continues.

And, one thing is certain, these young warriors will do whatever it takes, online and off, to win this war.